Inspired Family Interview with Maria Bentin of Precious Kisses (A Division of Project Sweet Peas)

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Nicole: Hi Maria! Thank you for taking the opportunity to discuss Precious Kisses with our Inspired Family community. We’re are thrilled to be working to support you and your cause.

Maria: Hi Nicole! Thank you so much for choosing Precious Kisses, a division of Project Sweet Peas as your community partner for the 2014 Inspired Family Conference! We have been looking for a way to connect with more families in our community to share our mission and passion for helping others, and the Inspired Family Conference is a perfect opportunity to do just that!

Nicole: Maria is the leader of Precious Kisses, which is a division of Project Sweet Peas. Maria, would you mind giving us some background on Project Sweet Peas?

Maria: Of course! Project Sweet Peas is a national non-profit organization that offers programs and services that support the well-being of families who have an infant in intensive care, and of those who have experienced pregnancy and infant loss.

We are a team of volunteers, who through personal experience have become passionate about providing support to other families facing a NICU stay. We work closely with hospitals to provide programs that support patients and their families. By providing care packages and other services that offer comfort, we are helping parents to further their bond with their child, and are providing treasured keepsakes to families who have experienced a loss. Through our services, we give from our hearts, to inspire families with the hope of tomorrow.

Nicole: How did Precious Kisses evolve from Project Sweet Peas?

Maria: The Precious Kisses division of Project Sweet Peas was formed in 2011 by Christine Tyson, and is named after her her boy/girl twins, Patrick and Kayleigh, who were born at 26 weeks gestation. They spent three months in the Pennsylvania Hospital Intensive Care Nursery (ICN) before her son was transferred to The Children’s Hospital of Philadelphia Neonatal Intensive Care Unity (NICU) for surgery. Christine’s twins are now 3 ½ years old and doing wonderful! I contacted Precious Kisses in early 2013, with the desire to volunteer and give back after our own four-month NICU stay with our twin girls Maci and Mia who were born at just 25 weeks gestation. Christine was getting ready to relocate and asked me to take over so they didn’t have to close the division. I was a little nervous to take this on with 9-month-old preemie twins and a 3 ½ year old, but I had resigned from my job and was up for the challenge.

Nicole: I know that many leaders and volunteers of Project Sweet Peas are choosing to volunteer their time to help based on their personal experiences & desire to help other families with children in intensive care units. We hope that you’ll share your story with our readers. What inspired you to join the Precious Kisses division?

Maria: I would be happy to share our story and will try to keep it brief, as the full story is available on our website: http://www.projectsweetpeas.com/index.php/precious-kisses. I have shared a lot of personal information because if my story of hope and miracles is able to help just one family out there, it’s all worth it.

After experiencing multiple miscarriages, uterine surgery to correct a congenital abnormality and ultimately fertility treatments, we were blessed with our son, Nico in 2009. When it came time to try for another baby a couple of years later, we followed doctors’ advice and did “what worked last time.” After all we had been through, we were excited, but very nervous when we found out I was carrying twins. At just 15 weeks, I was put on strict bed rest due to cervical shortening. At 23 weeks and 6 days, I experienced a huge bleed, called 911 and was rushed to Bryn Mawr Hospital. Doctors suspected a placental abruption and told us they would do all they could to hold off delivery as long as possible. One of the neonatologists educated us about the risks, survival rates and ultimately needed us to tell him what resuscitation measures should be taken in certain situations since the babies were on the threshold of viability.

Eight days later, at 25 weeks + 1 day, I went into active labor. Thirty minutes later, our twin daughters, Maci and Mia were delivered via emergency C-section (15 weeks early), weighing only 1 pound, 11 ounces each and measuring approximately 13 inches long.

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This was the scariest day of our lives. Our twins were given a 10% chance of survival, as well as a long list of other scary potential complications. The next day I asked the Neonatologist about survival percentages and if they had improved. What he told me that day really changed our whole perspective. Our daughters had either a 0% or 100% chance of survival and none of the numbers in between meant anything. From that moment we prayed like never before and forgot about the odds. Our girls were going to survive!

Maci Nicole spent 88 days in the NICU and came home around 37 1/2 weeks. Mia Victoria stayed past her due date, for a total of 113 days, and came home on lots of medication, due to the open valve in her heart (PDA). Both girls were on apnea and bradycardia monitors until they were 8 months old.

Though our girls had a pretty rough recovery, they were very fortunate to have escaped many of the life threatening complications common to babies born so early. The girls have benefited greatly from Early Intervention services over the last year and a half and we celebrate each and every developmental milestone they achieve. We are very blessed to have three happy and healthy children. Nico is now 4 ½ and the twins are 20 months old.

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Spending almost 4 months in the NICU has had such a big impact on my life and that of my family. Although our journey has not been easy, we realize that our girls have been extremely lucky. We could not have gotten through it without the support and prayers of our family, friends and especially the amazing Bryn Mawr Hospital NICU team. This experience has made me a different person and inspired me to do whatever I can to make a difference in the lives of others, especially those with precious babies who are born before their time. When you have a baby or babies in the NICU, your whole world is turned upside-down. Our care packages are prepared with love from one NICU family to another, to provide comfort, let them know that they are not alone, and to help nurture the bond between parents and their babies.

Nicole: Thank you for sharing your experience at the Bryn Mawr Hospital NICU with our readers! I know many of whom have gone through similar experiences or that may be preparing for their own journeys with the NICU will find comfort and support through your words. As a leader now, what do you feel is the best way to help support the families in the NICU?

Maria: When your precious newborn ends up in the NICU, your entire life comes to a halt and suddenly nothing else matters. Many people reached out to me to offer support while the twins were in the NICU, but I barely had time to take care of myself, let alone to make time to have long emotional conversations. I was very appreciative of the support being offered, but I just found it hard to make time to talk during the day. With that being said, I try to provide support from a distance and let families reach out to me if and when they are ready to talk. At the start of this project, I wrote a letter to NICU parents that we include with each NICU Care Package. In the letter, I first acknowledge that every family’s NICU experience is different, but then go on to mention some of the things we all have in common in an attempt to communicate that they are not alone and that there are others out there who understand the range of emotions that they may be feeling. I then go on to share things that I would have liked to know at the start of our NICU journey. Things like: how the phrase “take things one day at a time” has a whole new meaning, celebrating even the tiniest milestones, playing an active role in your baby’s care, asking lots of questions and being an advocate for your baby, using a blog or CarePages.com to provide updates to friends and family, seeking support from others who have been through it, and lastly, showing gratitude. The truth is, that I know nothing about the families who receive our care packages or what may be happening with their baby on any given day. The best that I can do is communicate that we are thinking about them and offer messages of hope.

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Nicole: How can our readers help support your mission? What items are you looking for people to donate & how can they reach out to you?

Maria: There are many ways to get involved and support Precious Kisses! I’ve listed some ideas below. Those interested in volunteering may email me at Maria@projectsweetpeas.com. In addition to our Facebook page, http://www.facebook.com/PSPPreciousKisses, we use a closed Facebook group, PSP Precious Kisses Volunteers, to manage volunteer efforts and share ideas.

1. Attend a Precious Kisses fundraiser – Make sure to “like” us on Facebook for updates on our latest events!
• Painting for Preemies II – March 27th at The Uncorked Artist, Warminster, PA
• Painting for Preemies III – May 3rd at BYOB & Paint, Phoenixville, PA

2. Donate
• Tax-deductible monetary donations may be made via our division’s website (http://www.projectsweetpeas.com/index.php/precious-kisses) or by mailing a check or money order made out to Precious Kisses. (Email me at maria@projectsweetpeas.com for our mailing address). A $25 donation covers the cost of 1 NICU Care Package with the option of including an Honor or Memorial Certificate.

• Item Donations: donate new items for our NICU Care Packages
o preemie/newborn PJs with snaps (no zippers)
o unscented hand sanitizer & hand lotion, travel sized toiletries, tissues
o gift cards for gas, food or baby items
o water bottles, travel coffee mugs (bpa free), non-perishable snacks
o journals, folders, pens, scrapbooks, photo frames/albums
o board books, small rattles or baby toys
o baby blankets, hats, booties, scratch mittens
o diapers (newborn or size 1)

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• Project Sweet Peas Adopt-a-Mom Campaign – A $7 donation will sponsor gifts (bracelets) for 4 moms in the NICU this Mother’s Day! For more information, visit projectsweetpeas.com (When donating, please select the Precious Kisses project so that gifts will be allocated to our local hospitals).

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3. Volunteer
• Host an Item Drive – Make some flyers and ask friends, family, your local school, business, church or community group to assist you in collecting items for our NICU care packages.
• Host a “sweet pea” baby shower and ask guests to bring a small gift for a NICU baby or make a monetary donation in lieu of favors
• Sell candy, hoagies, pizzas, pies, flowers, etc.
• Host a home show/demonstration/catalog or online sale – many independent consultants from Thirty One, Pampered Chef, Stella & Dot Jewelry, Pink Zebra, etc. will donate a % of sales
• Ask businesses/restaurants to contribute (gift cards for products/services, donate % of sales)
• Set up “sweet” coin jars at local businesses
• Ask your school or employer to have a “dress down” day where small monetary contributions are collected to allow students or employees to dress down

4. Hands On Help – We are always looking for volunteers who can sew, crochet or knit to make the following items:
• Sweet Pea Scent Dolls – made with soft flannel to absorb the mother’s scent and aid in bonding
during the infant’s NICU stay.
• blankets (fleece with simple crocheted edging or no-sew “tie” blankets)
• crocheted or knitted hats (9”-15”circumference)
• mini laundry bags with drawstrings to hang on isolettes for baby’s laundry

Various patterns & measurements can be found on our website: http://www.projectsweetpeas.com

Nicole: How do you select the families to whom you provide assistance and support? If our readers know of a family in need of Precious Kisses support, how should they best connect with you?

Maria: Initially when I took over the leadership of Precious Kisses and set up the program with three new hospitals, we thought maybe it would be best to focus on families with very premature babies (aka micropreemies) who would likely experience long NICU stays. However, in discussing it with other Project Sweet Peas leaders from around the country, we ultimately decided that Precious Kisses would not limit our assistance, since there are many full-term babies that end up in the NICU for a variety of reasons. Any NICU stay, regardless of the duration or severity, is a significant and sometimes life-changing event, and support should be available for every family.

Nicole: What hospitals are you affiliated with? If our readers know of families outside of the hospitals you are currently affiliated with, how can they connect to a Project Sweet Peas division or find support for an area not mentioned in the division listing?

Maria: We currently have programs established with three of the Main Line Hospital NICUs at: Bryn Mawr Hospital, Lankenau Medical Center, and Paoli Hospital. However, Precious Kisses also fulfills NICU Care Package requests for families in Eastern PA, NJ, DE, etc. The next closest divisions are in Western Pennsylvania and Rhode Island. The general guideline is that the division geographically closest is asked to fulfill the request. A full listing of our divisions and the hospitals we serve can be found here. NICU Care Packages and Memory Boxes can also be requested via our Project Sweet Peas website.

Nicole: Thank you for sharing these valuable connections with us! We hope that our readers reach out to you & help spread the word about Precious Kisses. As a mom soon to be delivering my daughter at Children’s Hospital of Philadelphia this June & destined to spend a lot of time in the cardiac intensive care unit, I thank you so much for the wonderful work that you’re doing. It is so incredible to know that there are people out there like you & organizations that are so proactively reaching out to families at their most vulnerable times.

Maria: Thank you so much for providing us with the opportunity to share our mission and passion for helping others. It is an honor to share our story of hope with moms like you who may find themselves facing a NICU stay. I’ll leave you with this…

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.” – Lance Armstrong

Nicole: Project Sweet Peas will be joining us at the Inspired Family Conference on March 22, 2014. Attendees are encouraged to bring items from the list Maria mentioned for donation in their care packages. For every item donated, Inspired Family will provide you with an additional raffle ticket for even more chances to win some of our awesome event giveaways. Thank you Maria for all the wonderful work that you’re doing for the community!